Living With Parkinson’s Disease

IF YOU met my mother today for the first time, chances are you would have no idea that she has Parkinson’s disease. Although the symptoms are obvious at times, she is still able to go shopping, clean the house, and generally carry out the normal activities of daily life.

A little over 12 years ago, however, it was a different story. I had just learned that Mom had been diagnosed as having the disease. I wanted to visit her, but I didn’t want to arrive uninformed. So before traveling, I did extensive reading about the disorder. Yet, even this didn’t prepare me for what I saw.

The vivacious woman I remembered moved like an automaton. Her arms were held stiffly, close to her sides, her fingers unnaturally straight. Although erect as she had always been, she walked with little steps, shuffling, and with an agonizing slowness that belied the energy I knew was inside. It was her face, however, that made my heart sink. It was like a mask: wooden, expressionless. She smiled, but only with her mouth. Her eyes were unaffected.

Mom told me that it took two years of visits with various doctors to be correctly diagnosed. As with many, her initial symptoms were ambiguous: deep aching in joints and muscles and difficulty in just shampooing her hair and brushing her teeth. As the symptoms settled in, she began to have difficulty turning over in bed, and my father would have to help her. Walking became more difficult. Although she loved her active life in the Christian ministry, she often found that she could not even speak clearly and had to cut back her activities.

Shocked by what I saw, I began to delve into the matter. What causes this affliction? Can it be cured? Might I get it some day? How active a life can a person with such a disease have?

I soon learned that an astounding number of people contract Parkinson’s disease​—one out of every 150 to 200 persons! According to the American Parkinson Disease Association, there are from a million to a million and a half cases in the United States alone. Fortunately, with proper care the vast majority of sufferers are able to manage quite well.

What Is It?

James Parkinson, whose name was given to the disease, described the condition in 1817. His description remains remarkably complete and accurate: “Involuntary tremulous motion, with lessened muscular power, in parts not in action and even when supported; with a propensity to bend the trunk forward, and to pass from a walking to a running pace, the senses and intellects being uninjured.”a

It was the last portion that gave me great relief: Mom would retain both her intellect and her senses! She would not lose the ability to relish good food, be delighted by music, become touched or tickled by a talented author, or enjoy any of the many beauties of creation that she loves so much. The lack of spontaneous movement and reactions that I saw had nothing to do with the keen mind that was still very much alive within her.

At the beginning of his description, Parkinson mentioned “involuntary tremulous motion.” This slow, rhythmic tremor, especially of the hands, is the symptom I and most people associate with Parkinson’s disease, for it is the most obvious. In fact, the clinical name for Parkinson’s is paralysis agitans, the second word implying agitation or shaking. However, Mom showed no sign of it, nor does she to this day. ‘Why not?’ I wondered. Dr. Leo Treciokas, adjunct associate professor of neurology at University of California at Los Angeles, explained to me that for some unknown reason a significant percentage never get tremor. In others, tremor is the main symptom.

Everyone who has Parkinson’s, though, gets two other symptoms and almost always before any tremor sets in: rigidity or stiffness of the muscles, and what is called akinesia​—an unconscious lack of inclination to use the affected muscles even semiautomatically. This results in a slowness of movement, called bradykinesia. Some neurologists include difficulty in walking and in balance as separate but main symptoms.

The stiffness is really the result of the person’s muscles pulling steadily against one another. As the muscles that bend the body are affected more than those used to straighten it up, a person with Parkinson’s disease gradually assumes a stooped posture. It also makes his muscles and joints ache severely.

Contributing to these symptoms is the akinesia. In healthy people a host of little reflexes accompany the most basic actions: getting up, walking, turning, stopping, and even smiling. In Parkinson’s patients, many of these reflexes are absent or require conscious effort. (That is why Mom looked so expressionless and mechanical.) In addition, short, alternating movements, as used when one brushes one’s teeth, are hard for them. Their handwriting usually gets small and cramped after the first few words. They tend to sit and stare, moving the eyes rather than the head to look somewhere else. And yet they are neither stupid nor lazy.

Pronounced difficulty in walking and balance usually develops as well. My mom, like others, needs to take several little steps before she can break into a stride. Most walk with a constant shuffle, and many have what is called festinating gait (from the Latin festinare, to hasten). Tending to lean forward, their short steps will increase in rapidity till they are nearly running, and they will fall unless they can catch themselves​—or someone else does. Even when walking is under control, anything that suggests a change in equilibrium​—a looming obstacle, a moving stairway, even a line on the floor—​may cause the person to lose his balance and fall or even freeze.

What Can Be Done

These disheartening symptoms are no longer as disabling as they were only recently. In fact, because of medical advances that are less than 20 years old, Parkinson’s patients can now enjoy a very productive life in spite of their affliction.

As the symptoms are caused by an imbalance in the brain between two body chemicals, dopamine and acetylcholine (see box on page 15), doctors will generally try to restore that balance. How? By providing dopamine to the brain through the blood. However, dopamine itself can’t get past what is called the blood-brain barrier, so it gets used up in the body. But another substance, called levodopa, or L-dopa, can get through. It is turned into dopamine by normal metabolism, both inside and outside the brain.

When taken by itself in therapeutic doses, L-dopa has numerous side effects. This is because so much of it is transformed into dopamine before it reaches the brain. To prevent these side effects, inhibitors are added.

Does the therapy work? Yes, in many cases. The major disabling symptoms of Parkinson’s (rigidity, akinesia, difficulty in walking and balance, and sometimes tremor) are frequently reduced, sometimes dramatically. In fact, Parkinson’s patients now may have about the same life expectancy as anyone else. But does this therapy work perfectly? Unfortunately, no. Only the body itself knows exactly how much dopamine is needed and can normally produce it in such precise doses. Supplying it orally is only second best.

Since some people have immediate negative reactions to L-dopa, and because its effectiveness wanes with the years even in those who respond well, other treatments are also used.

What the Patient Can Do

But is there anything else that can be done? Yes, some very important things. One of them is regular exercise. Since movement is difficult and often painful, and balance may be a problem, the tendency of a Parkinson’s patient is to restrict his activities severely. Without exercise, however, everything gets worse. Muscles and joints get stiffer and may become rigid. Blood circulation suffers, which may lead to other illnesses. A tendency to become withdrawn and eventually totally dependent on others may develop.

For these reasons, neurologists say that a program of regular exercise is essential for maintaining well-being and mobility. Of course, a doctor should be consulted for each individual case. But, generally, simple daily exercises, such as walks of moderate length, swimming, and especially stretching and straightening exercises, help maintain suppleness and strength of muscles and the brain’s ability to adapt to its new chemical circumstances.

The coordination problems that Parkinson’s disease causes in walking, speaking, and writing can be helped by conscious effort. The UCLA School of Medicine and the American Parkinson Disease Association recommend slow, deliberate motions for each of these, which allow the higher motor centers in the brain to learn to compensate​—at least to some degree—​for the spontaneous reflexes now missing.

What Others Can Do

Others can assist as well. A Manual for Patients With Parkinson’s Disease gives this suggestion for helping those who have difficulty in walking: “A gentle offer of support or giving the patient a hand to hang onto may be all that is required to get the patient started again. The patient should always take the hand or arm of the helping person rather than being ‘helped along’ because suddenly grasping the patient’s hand or arm often throws him or her farther off balance.”

Encouragement is especially helpful. As Harrison’s Principles of Internal Medicine (1983) states: “The severity of the symptoms is considerably influenced by emotional factors, being aggravated by anxiety, tension, and unhappiness, and minimal when the patient is in a contented frame of mind. . . . The patient often needs much emotional support in meeting the stress of the illness, in comprehending its nature, and in carrying on courageously in spite of it.” Thus, loving consideration, care, and reassurance go far in helping a person to live with Parkinson’s disease.

Medical science does not yet understand the causes of this disease and therefore cannot offer a cure. However, my mother is sustained by the knowledge that the Creator does and that he will provide such a cure under his Kingdom by Christ Jesus. (Isaiah 33:24; Luke 9:11; Revelation 21:1-4) Until that time, she and many others are effectively coping with Parkinson’s disease.​—Contributed.

[Footnotes]

[Box on page 14]

Physical Helps for Parkinson’s Patientsb

◼ Firm chairs, slanted forward, are easier to get out of than low, deep, soft ones.

◼ A rail by the bed and by the toilet helps the patient to get up.

◼ A bed pull (a cord attached to the end of the bed) can assist the patient to sit up and turn over.

◼ A shower caddy holding needed items at about shoulder level, soap on a rope, and a sponge on a handle may be useful in showering.

◼ On clothing, pull-apart closures like Velcro are easier to handle than buttons or zippers.

[Footnotes]

[Box/​Picture on page 15]

What Causes Parkinson’s?

This is what the medical profession wanted to know right up until the 1960’s. In fact, the root cause is still not known, but the cause of the symptoms has been found.

In the brain stem, about level with the top of your ears, is a plate of dark nerve tissue called the substantia nigra, or black substance. The substantia nigra is part of a feedback system for the brain and produces a chemical messenger for nerve transmission called dopamine that is used deep inside the brain for modulating or smoothing out movement of the body.

In Parkinson’s patients, 80 percent or more of this nerve tissue is lost. Because of a lack of dopamine, a precious balance with another nerve messenger, acetylcholine, is also lost. This brings on the symptoms.

Why the substantia nigra degenerates, and why only it does, is still a mystery. The disease is evidently not hereditary, although there is now some evidence that susceptibility may be. In some cases, the symptoms are not due to Parkinson’s at all but to adverse reactions to certain drugs, such as reserpine and phenothiazine, which are used at times to control high blood pressure and mental imbalance. Withdrawal of these medications generally restores normality. Other recent cases are due to new “designer drugs” that look and act like heroin. When bad batches of these have been used, they have irreversibly destroyed the substantia nigra in those who have taken them, producing a condition indistinguishable from true Parkinson’s disease.

[Picture]

Substantia nigra